Re: Good point e re: SMA students w/assistants/ parent perspective

[Guest guest]

I'm not attacking ANYONE or any particular idea that has been expressed. I just

want to point out a few things that I don't think are occuring to most people.

First, I'd like to point out that MANY (not all) of you who have a diagnosis

of type 2 walked (or at least stood) independently for some of your younger

years. Even just 10 years ago, children as weak as Brett, h, B. and the

other children who have parents on this list... well, to be blunt, they just

didn't live long enough to get to jr. high or high school. Remember that the

classification system has changed a bit and now anyone who has stood or walked

independently is diagnosed as a type 3. Many of the type 3 children do NOT

require or have one on one aids. They have more strength, especially upper

body, and don't require as much assistance. h can't even get a notebook out

of her desk without assistance. She also requires a suction machine at school

which must be kept in the one bathroom that is accessible. A student can't

possibly help her with that!

Our experience: h has always had a one on one aide since pre-K (in ECIP at

3 there was a classroom aide that spent most of her time with h) and to be

blunt, could probably not have survived in school without one. h can write

some, but she tires easily and needs someone to scribe for her. She can't manage

her books, papers or other supplies. She can't open doors or her locker. h

sometimes even requires assistance to eat.

This year the school board decided that h didn't need a one on one aide.

She went to school a total of 7 days before she left for her spinal fusion (Aug

11 was her last day) and after those 7 days h's teachers and the students

(her friends) who were expected to help her were obviously frustrated which made

h feel terrible. h and the friends who were helping her were getting in

trouble for being late to classes because not only did the girls have to go to

their own lockers, but then to h's and then getting through the halls takes

longer because of h's chair... you get the point. The faculty is expecting

the girls to be able to accomplish doing twice as much in the same amount of

time! It's not fair to put that kind of responsibility on a 10 year old. It's

also not fair that h's friends are so overwhelmed and frustrated by the

situation that they don't really WANT to help anymore. These are the same girls

that have been in class with h for 2

years and have JUMPED to help whenever h's aide was busy or out of the room

for a moment. The difference is that before they were helping because they

WANTED to and now they are EXPECTED to.

I don't feel like it's fair to say that our kids are going to grow up with

" expectations " or to imply that they won't be as productive or independent as

adults because we are babying them now. Just about everyone here who has known

me for anytime at all should know that I encourage h to do everything she

can to the best of her ability. Her best just may not be the same as y'alls

best! She's one of the weaker type 2's and does well within HER bounderies. I

believe Brett and are also weaker type 2's (correct me if I'm wrong moms!)

and like h, probably couldn't survive and succeed in the school system.

Maybe I'm just cranky because we've spent the past almost 4 weeks in the

hospital, but I kind of feel like y'all are questioning our judgement in making

sure our kids have assistance in school. I seriously hope I've misinterpreted

the entire thread.

Love and Hugs

Jeni

[Guest guest]

Gosh, I feel kind of responsible for starting this whole

thing. I mostly just was surprised they even had such a

thing as " one on one aides " because they certainly didn't

have them when I was in school in the 70s and 80s. The

public schools in my town seem to run on a constant budget

shortage and I just was amazed they had/found money

to do that.

I can especially see how it'd important to have

someone available for suctioning and other more

complex medical procedures. When I was in school, I

didn't have very many breathing problems, but I couldn't

walk at all and needed help moving pretty much

everything around. My writing was fine though. Later on

in high school, when I started getting bronchitis and

things like that, I always had to go to the nurse's

office for help.

But I'm sure parents on here know best what their kids

need, especially when they are still in grade school. Once

they get older, if they don't want the one on one aide, I'm

sure they'd let you know.

Jenn (the other one)

[Guest guest]

Hi Jenifer and other parents,

When I wrote about Danny's experiences at school without an aid, I

certaintly didn't mean that parents who get a one-on-one aid for their

kids are in the wrong. Every child' abilities and needs vary, even

within each type of SMA. Danny has type 2. He never walked, only

crawled til age 2, then got his first manual wheelchair then power at

age 4. He needed help with just about everything that needed any

strength to accomplish. To avoid locker problems, he always kept all

his books, etc. in his backpack on his wheelchair. Fortunately, he

didn't need suctioning or other medical assistance until recent years

(he's 24 now). Had he needed medical type help, things might have been

different. Anyway, I just wanted to give a different perspective to

the assistant issue and what worked best for him. If I made it sound

like I was disputing what other parents knew as best for their kids,

then I'm really sorry.

Hugs from Texas,

>

> I'm not attacking ANYONE or any particular idea that has been

expressed. I just want to point out a few things that I don't think

are occuring to most people.

> First, I'd like to point out that MANY (not all) of you who have a

diagnosis of type 2 walked (or at least stood) independently for some

of your younger years. Even just 10 years ago, children as weak as

Brett, h, B. and the other children who have parents on this

list... well, to be blunt, they just didn't live long enough to get to

jr. high or high school. Remember that the classification system has

changed a bit and now anyone who has stood or walked independently is

diagnosed as a type 3. Many of the type 3 children do NOT require or

have one on one aids. They have more strength, especially upper body,

and don't require as much assistance. h can't even get a notebook

out of her desk without assistance. She also requires a suction

machine at school which must be kept in the one bathroom that is

accessible. A student can't possibly help her with that!

> Our experience: h has always had a one on one aide since pre-K

(in ECIP at 3 there was a classroom aide that spent most of her time

with h) and to be blunt, could probably not have survived in

school without one. h can write some, but she tires easily and

needs someone to scribe for her. She can't manage her books, papers or

other supplies. She can't open doors or her locker. h sometimes

even requires assistance to eat.

> This year the school board decided that h didn't need a one on

one aide. She went to school a total of 7 days before she left for her

spinal fusion (Aug 11 was her last day) and after those 7 days h's

teachers and the students (her friends) who were expected to help her

were obviously frustrated which made h feel terrible. h and

the friends who were helping her were getting in trouble for being

late to classes because not only did the girls have to go to their own

lockers, but then to h's and then getting through the halls takes

longer because of h's chair... you get the point. The faculty is

expecting the girls to be able to accomplish doing twice as much in

the same amount of time! It's not fair to put that kind of

responsibility on a 10 year old. It's also not fair that h's

friends are so overwhelmed and frustrated by the situation that they

don't really WANT to help anymore. These are the same girls that have

been in class with h for 2

> years and have JUMPED to help whenever h's aide was busy or out

of the room for a moment. The difference is that before they were

helping because they WANTED to and now they are EXPECTED to.

> I don't feel like it's fair to say that our kids are going to grow

up with " expectations " or to imply that they won't be as productive or

independent as adults because we are babying them now. Just about

everyone here who has known me for anytime at all should know that I

encourage h to do everything she can to the best of her ability.

Her best just may not be the same as y'alls best! She's one of the

weaker type 2's and does well within HER bounderies. I believe Brett

and are also weaker type 2's (correct me if I'm wrong moms!) and

like h, probably couldn't survive and succeed in the school system.

> Maybe I'm just cranky because we've spent the past almost 4 weeks

in the hospital, but I kind of feel like y'all are questioning our

judgement in making sure our kids have assistance in school. I

seriously hope I've misinterpreted the entire thread.

>

>

>

> Love and Hugs

> Jeni

>

>

>

>

[Guest guest]

I just wanted to add that I agree with you Jeni. I would love it if Brett didn't

need the one on one aide- but that is not the case. In my experience (although

limited)- the kids love to help- but it gets old when they have to. I don't want

Brett to ever feel like he is a burden on anyone- especially his friends at

school. I like the idea of his aide doing the necessity items and his friends

being asked to help now and then. Brett will also tell his aide- I am okay- you

can do something else for awhile. I do hope that as Brett gets older, he may

need an aide less during class and only for set- up and leaving and stuff. RIght

now, Brett uses markers for writing and he can't pull the caps off or he can't

reach into his backpack to grab any supplies- or reach in his desk to grab

supplies, etc. We also have a weird set- up in that his " power " tray is not

functional- so it has to be removed and replaced with his " work " tray for class

work- which a classmate could not do at this time- it is pretty hard to do. I am

starting to ramble, but I just wanted to add in my thoughts.

Kristal

Mom to Brett- SMA II- 6-1/2 years old

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

Learn more about SMA:

www.fsma.org

www.smasupport.com

Re: Good point e re: SMA students w/assistants/

parent perspective

I'm not attacking ANYONE or any particular idea that has been expressed. I

just want to point out a few things that I don't think are occuring to most

people.

First, I'd like to point out that MANY (not all) of you who have a diagnosis

of type 2 walked (or at least stood) independently for some of your younger

years. Even just 10 years ago, children as weak as Brett, h, B. and the

other children who have parents on this list... well, to be blunt, they just

didn't live long enough to get to jr. high or high school. Remember that the

classification system has changed a bit and now anyone who has stood or walked

independently is diagnosed as a type 3. Many of the type 3 children do NOT

require or have one on one aids. They have more strength, especially upper body,

and don't require as much assistance. h can't even get a notebook out of her

desk without assistance. She also requires a suction machine at school which

must be kept in the one bathroom that is accessible. A student can't possibly

help her with that!

Our experience: h has always had a one on one aide since pre-K (in ECIP at

3 there was a classroom aide that spent most of her time with h) and to be

blunt, could probably not have survived in school without one. h can write

some, but she tires easily and needs someone to scribe for her. She can't manage

her books, papers or other supplies. She can't open doors or her locker. h

sometimes even requires assistance to eat.

This year the school board decided that h didn't need a one on one aide.

She went to school a total of 7 days before she left for her spinal fusion (Aug

11 was her last day) and after those 7 days h's teachers and the students

(her friends) who were expected to help her were obviously frustrated which made

h feel terrible. h and the friends who were helping her were getting in

trouble for being late to classes because not only did the girls have to go to

their own lockers, but then to h's and then getting through the halls takes

longer because of h's chair... you get the point. The faculty is expecting

the girls to be able to accomplish doing twice as much in the same amount of

time! It's not fair to put that kind of responsibility on a 10 year old. It's

also not fair that h's friends are so overwhelmed and frustrated by the

situation that they don't really WANT to help anymore. These are the same girls

that have been in class with h for 2

years and have JUMPED to help whenever h's aide was busy or out of the

room for a moment. The difference is that before they were helping because they

WANTED to and now they are EXPECTED to.

I don't feel like it's fair to say that our kids are going to grow up with

" expectations " or to imply that they won't be as productive or independent as

adults because we are babying them now. Just about everyone here who has known

me for anytime at all should know that I encourage h to do everything she

can to the best of her ability. Her best just may not be the same as y'alls

best! She's one of the weaker type 2's and does well within HER bounderies. I

believe Brett and are also weaker type 2's (correct me if I'm wrong moms!)

and like h, probably couldn't survive and succeed in the school system.

Maybe I'm just cranky because we've spent the past almost 4 weeks in the

hospital, but I kind of feel like y'all are questioning our judgement in making

sure our kids have assistance in school. I seriously hope I've misinterpreted

the entire thread.

Love and Hugs

Jeni

[Guest guest]

Jeni,

I hope you know I've always thought you're a great mom and that h's a great

kid! I didn't mean to imply that anyone was wrong for having assistance at

school. I was only surprised by the apparent prevalence, and was sorta thinking

aloud, wondering how I personally would have felt about it as a student. I think

my own needs have always been very intermediate type 2. I've never had much

upper body strength at all, but I've stayed mostly healthy and haven't ever

needed suctioning or help writing at school.

I think we all know that SMA is VERY individual. None of us can claim that our

experience has any relation to anyone besides ourselves. But it's still

interesting to share experiences.

-e

Re: Good point e re: SMA students w/assistants/

parent perspective

I'm not attacking ANYONE or any particular idea that has been expressed. I

just want to point out a few things that I don't think are occuring to most

people.

First, I'd like to point out that MANY (not all) of you who have a diagnosis of

type 2 walked (or at least stood) independently for some of your younger years.

Even just 10 years ago, children as weak as Brett, h, B. and the other

children who have parents on this list... well, to be blunt, they just didn't

live long enough to get to jr. high or high school. Remember that the

classification system has changed a bit and now anyone who has stood or walked

independently is diagnosed as a type 3. Many of the type 3 children do NOT

require or have one on one aids. They have more strength, especially upper body,

and don't require as much assistance. h can't even get a notebook out of her

desk without assistance. She also requires a suction machine at school which

must be kept in the one bathroom that is accessible. A student can't possibly

help her with that!

Our experience: h has always had a one on one aide since pre-K (in ECIP at

3 there was a classroom aide that spent most of her time with h) and to be

blunt, could probably not have survived in school without one. h can write

some, but she tires easily and needs someone to scribe for her. She can't manage

her books, papers or other supplies. She can't open doors or her locker. h

sometimes even requires assistance to eat.

This year the school board decided that h didn't need a one on one aide.

She went to school a total of 7 days before she left for her spinal fusion (Aug

11 was her last day) and after those 7 days h's teachers and the students

(her friends) who were expected to help her were obviously frustrated which made

h feel terrible. h and the friends who were helping her were getting in

trouble for being late to classes because not only did the girls have to go to

their own lockers, but then to h's and then getting through the halls takes

longer because of h's chair... you get the point. The faculty is expecting

the girls to be able to accomplish doing twice as much in the same amount of

time! It's not fair to put that kind of responsibility on a 10 year old. It's

also not fair that h's friends are so overwhelmed and frustrated by the

situation that they don't really WANT to help anymore. These are the same girls

that have been in class with h for 2

years and have JUMPED to help whenever h's aide was busy or out of the room

for a moment. The difference is that before they were helping because they

WANTED to and now they are EXPECTED to.

I don't feel like it's fair to say that our kids are going to grow up with

" expectations " or to imply that they won't be as productive or independent as

adults because we are babying them now. Just about everyone here who has known

me for anytime at all should know that I encourage h to do everything she

can to the best of her ability. Her best just may not be the same as y'alls

best! She's one of the weaker type 2's and does well within HER bounderies. I

believe Brett and are also weaker type 2's (correct me if I'm wrong moms!)

and like h, probably couldn't survive and succeed in the school system.

Maybe I'm just cranky because we've spent the past almost 4 weeks in the

hospital, but I kind of feel like y'all are questioning our judgement in making

sure our kids have assistance in school. I seriously hope I've misinterpreted

the entire thread.

Love and Hugs

Jeni

[Guest guest]

The same goes for me as well. I was just wowwed by todays kids schoolling and

sharing my school experience. Similar, but definitely not the same.

Like e, I had very little upper arm strength, but great use of my hands

and had a sturdy, respiratory system. I only had a positive pressure

machine that expanded my lungs and made me " Fluffy " ... I was 4-5yrs when I

began using it and within one year I stopped. Before long I gained weight and

no longer looked pale; still have rosey cheeks today! I think because of

those two physical advantages it makes my school day memories wonderful.

Still curious as to how many kids are also disabled at your kids school?

To effect change you may have to " corral " your school principal into a corner

with all the parents of the other disabled students.

Angie

On Saturday 09 September 2006 02:21, PurplGurl3@... wrote:

> Jeni,

>

> I hope you know I've always thought you're a great mom and that h's a

> great kid! I didn't mean to imply that anyone was wrong for having

> assistance at school. I was only surprised by the apparent prevalence, and

> was sorta thinking aloud, wondering how I personally would have felt about

> it as a student. I think my own needs have always been very intermediate

> type 2. I've never had much upper body strength at all, but I've stayed

> mostly healthy and haven't ever needed suctioning or help writing at

> school.

>

> I think we all know that SMA is VERY individual. None of us can claim that

> our experience has any relation to anyone besides ourselves. But it's still

> interesting to share experiences.

>

> -e

>

> Re: Good point e re: SMA students

> w/assistants/ parent perspective

>

> I'm not attacking ANYONE or any particular idea that has been

> expressed. I just want to point out a few things that I don't think are

> occuring to most people. First, I'd like to point out that MANY (not all)

> of you who have a diagnosis of type 2 walked (or at least stood)

> independently for some of your younger years. Even just 10 years ago,

> children as weak as Brett, h, B. and the other children who have

> parents on this list... well, to be blunt, they just didn't live long

> enough to get to jr. high or high school. Remember that the classification

> system has changed a bit and now anyone who has stood or walked

> independently is diagnosed as a type 3. Many of the type 3 children do NOT

> require or have one on one aids. They have more strength, especially upper

> body, and don't require as much assistance. h can't even get a notebook

> out of her desk without assistance. She also requires a suction machine at

> school which must be kept in the one bathroom that is accessible. A student

> can't possibly help her with that! Our experience: h has always had a

> one on one aide since pre-K (in ECIP at 3 there was a classroom aide that

> spent most of her time with h) and to be blunt, could probably not have

> survived in school without one. h can write some, but she tires easily

> and needs someone to scribe for her. She can't manage her books, papers or

> other supplies. She can't open doors or her locker. h sometimes even

> requires assistance to eat. This year the school board decided that h

> didn't need a one on one aide. She went to school a total of 7 days before

> she left for her spinal fusion (Aug 11 was her last day) and after those 7

> days h's teachers and the students (her friends) who were expected to

> help her were obviously frustrated which made h feel terrible. h

> and the friends who were helping her were getting in trouble for being late

> to classes because not only did the girls have to go to their own lockers,

> but then to h's and then getting through the halls takes longer because

> of h's chair... you get the point. The faculty is expecting the girls

> to be able to accomplish doing twice as much in the same amount of time!

> It's not fair to put that kind of responsibility on a 10 year old. It's

> also not fair that h's friends are so overwhelmed and frustrated by the

> situation that they don't really WANT to help anymore. These are the same

> girls that have been in class with h for 2 years and have JUMPED to

> help whenever h's aide was busy or out of the room for a moment. The

> difference is that before they were helping because they WANTED to and now

> they are EXPECTED to. I don't feel like it's fair to say that our kids are

> going to grow up with " expectations " or to imply that they won't be as

> productive or independent as adults because we are babying them now. Just

> about everyone here who has known me for anytime at all should know that I

> encourage h to do everything she can to the best of her ability. Her

> best just may not be the same as y'alls best! She's one of the weaker type

> 2's and does well within HER bounderies. I believe Brett and are also

> weaker type 2's (correct me if I'm wrong moms!) and like h, probably

> couldn't survive and succeed in the school system. Maybe I'm just cranky

> because we've spent the past almost 4 weeks in the hospital, but I kind of

> feel like y'all are questioning our judgement in making sure our kids have

> assistance in school. I seriously hope I've misinterpreted the entire

> thread.

>

> Love and Hugs

> Jeni

>

>

>

[Guest guest]

I fully believe that these children need one-on-one care. I do,

however, wonder why parents expect the school system to pay for it.

Lori

jennifer wrote:

> Gosh, I feel kind of responsible for starting this whole

> thing. I mostly just was surprised they even had such a

> thing as " one on one aides " because they certainly didn't

> have them when I was in school in the 70s and 80s. The

> public schools in my town seem to run on a constant budget

> shortage and I just was amazed they had/found money

> to do that.

>

> I can especially see how it'd important to have

> someone available for suctioning and other more

> complex medical procedures. When I was in school, I

> didn't have very many breathing problems, but I couldn't

> walk at all and needed help moving pretty much

> everything around. My writing was fine though. Later on

> in high school, when I started getting bronchitis and

> things like that, I always had to go to the nurse's

> office for help.

>

> But I'm sure parents on here know best what their kids

> need, especially when they are still in grade school. Once

> they get older, if they don't want the one on one aide, I'm

> sure they'd let you know.

>

> Jenn (the other one)

>

>

[Guest guest]

Jeni I want to highly agree with you!! I have had a 1

on 1 aid since PreK as well. Even now in college I

still have that. For the mass now, I need someone with

me in case I need sectioned. Lets start at the

beginning!

Starting in PreK till say grade 2, my 1 on 1 was there

to help me with toileting, writing, and getting my

stuff. I was trached in grade 2 so they then took on

that responsibility. In grade 3 I had a friend who

took on that responsibilty when the teacher allowed

it. If we werent doing anything big, the teacher did

not care if she took me to the restroom to suction. I

still had a 1 on 1 aide, but she set back to allow me

freedom. I had that same friend from grade 3 to 5. She

walked with me to classes as we had the same ones. She

even got to school early and waited out front for me

on the days we had honors choir practice together.

In middle school grade 6 - 8 I again had a 1 on 1 who

assisted me with getting things, writing if I needed

someone to take notes when I was tired, and

suctioning. By this age I learned to hold my bladder

till I got home! Again I had friends that also took on

some of those responsibilities. Each of my teachers

allowed one friend to leave 5 min early with me to get

through the halls. They totally supported me trying to

have my own independence!

In high school I really got more independent but still

had a 1 on 1 aid. In grade 9 she met me at the bus,

was in all my classes and just sat back until I needed

her. my boyfriend or other kids in the class would get

my instrument for band or my books or whatever. By

highschool I learned to fight the crowds and did not

leave all of my classes early. Usually my aid would

just meet me at my next class and I would walk with

friends. In grades 10-12 my friend drove to school

with me and we had most classes together. So she took

on most of my responsibilites. By highschool I rarely

needed help with notes unless I was too cold to write.

So then my 1 on 1 was mostly there for my medical

needs when my friend couldnt do it.

My first 2 years of college my best friend took me and

became my 1 on 1 aid. All of our classes matched so it

worked fine. Now in University, my mother takes me and

plays the role of my aid.

I was lucky enough throughout school to have friends

and a school system that worked with me.. but I did

need that 1 on 1 aid! I also cannot lift a book or

open a door or get things out of my bag or get to my

suction alone... I needed that aide so that if one day

my friend wasnt there, my aid was! I always had back

up aides as well!

Whew that was long!

>

> Re: Good point e re:

> SMA students w/assistants/ parent perspective

>

> I'm not attacking ANYONE or any particular idea

> that has been expressed. I just want to point out a

> few things that I don't think are occuring to most

> people.

> First, I'd like to point out that MANY (not all) of

> you who have a diagnosis of type 2 walked (or at

> least stood) independently for some of your younger

> years. Even just 10 years ago, children as weak as

> Brett, h, B. and the other children who

> have parents on this list... well, to be blunt, they

> just didn't live long enough to get to jr. high or

> high school. Remember that the classification system

> has changed a bit and now anyone who has stood or

> walked independently is diagnosed as a type 3. Many

> of the type 3 children do NOT require or have one on

> one aids. They have more strength, especially upper

> body, and don't require as much assistance. h

> can't even get a notebook out of her desk without

> assistance. She also requires a suction machine at

> school which must be kept in the one bathroom that

> is accessible. A student can't possibly help her

> with that!

> Our experience: h has always had a one on one

> aide since pre-K (in ECIP at 3 there was a classroom

> aide that spent most of her time with h) and to

> be blunt, could probably not have survived in school

> without one. h can write some, but she tires

> easily and needs someone to scribe for her. She

> can't manage her books, papers or other supplies.

> She can't open doors or her locker. h sometimes

> even requires assistance to eat.

> This year the school board decided that h

> didn't need a one on one aide. She went to school a

> total of 7 days before she left for her spinal

> fusion (Aug 11 was her last day) and after those 7

> days h's teachers and the students (her friends)

> who were expected to help her were obviously

> frustrated which made h feel terrible. h and

> the friends who were helping her were getting in

> trouble for being late to classes because not only

> did the girls have to go to their own lockers, but

> then to h's and then getting through the halls

> takes longer because of h's chair... you get the

> point. The faculty is expecting the girls to be able

> to accomplish doing twice as much in the same amount

> of time! It's not fair to put that kind of

> responsibility on a 10 year old. It's also not fair

> that h's friends are so overwhelmed and

> frustrated by the situation that they don't really

> WANT to help anymore. These are the same girls that

> have been in class with h for 2

> years and have JUMPED to help whenever h's aide

> was busy or out of the room for a moment. The

> difference is that before they were helping because

> they WANTED to and now they are EXPECTED to.

> I don't feel like it's fair to say that our kids

> are going to grow up with " expectations " or to imply

> that they won't be as productive or independent as

> adults because we are babying them now. Just about

> everyone here who has known me for anytime at all

> should know that I encourage h to do everything

> she can to the best of her ability. Her best just

> may not be the same as y'alls best! She's one of the

> weaker type 2's and does well within HER bounderies.

> I believe Brett and are also weaker type 2's

> (correct me if I'm wrong moms!) and like h,

> probably couldn't survive and succeed in the school

> system.

> Maybe I'm just cranky because we've spent the past

> almost 4 weeks in the hospital, but I kind of feel

> like y'all are questioning our judgement in making

> sure our kids have assistance in school. I seriously

> hope I've misinterpreted the entire thread.

>

> Love and Hugs

> Jeni

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

________________________________________________________________________

> Check out the new AOL. Most comprehensive set of

> free safety and security tools, free access to

> millions of high-quality videos from across the web,

> free AOL Mail and more.

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Seriously? I guess it's for the same reason that the adults on the list expect

the government to cover part of their attendent care. The adults need people to

assist with daily living -- for our kids, school is part of daily living.

Those Two <those2@...> wrote: I fully believe that these

children need one-on-one care. I do,

however, wonder why parents expect the school system to pay for it.

Lori

jennifer wrote:

> Gosh, I feel kind of responsible for starting this whole

> thing. I mostly just was surprised they even had such a

> thing as " one on one aides " because they certainly didn't

> have them when I was in school in the 70s and 80s. The

> public schools in my town seem to run on a constant budget

> shortage and I just was amazed they had/found money

> to do that.

>

> I can especially see how it'd important to have

> someone available for suctioning and other more

> complex medical procedures. When I was in school, I

> didn't have very many breathing problems, but I couldn't

> walk at all and needed help moving pretty much

> everything around. My writing was fine though. Later on

> in high school, when I started getting bronchitis and

> things like that, I always had to go to the nurse's

> office for help.

>

> But I'm sure parents on here know best what their kids

> need, especially when they are still in grade school. Once

> they get older, if they don't want the one on one aide, I'm

> sure they'd let you know.

>

> Jenn (the other one)

>

>

Love and Hugs

Jeni

[Guest guest]

Thanks . I see that having a 1 on 1 hasn't made you more dependent or

expectant, so we must not be doing THAT badly *LOL*

Oh, I will be sending pics w/in a few days. Miss h is looking forward to

some strappy little tank tops!

Hugs

Jeni

*~~* <abrcrombsweetie@...> wrote:

Jeni I want to highly agree with you!! I have had a 1

on 1 aid since PreK as well. Even now in college I

still have that. For the mass now, I need someone with

me in case I need sectioned. Lets start at the

beginning!

Starting in PreK till say grade 2, my 1 on 1 was there

to help me with toileting, writing, and getting my

stuff. I was trached in grade 2 so they then took on

that responsibility. In grade 3 I had a friend who

took on that responsibilty when the teacher allowed

it. If we werent doing anything big, the teacher did

not care if she took me to the restroom to suction. I

still had a 1 on 1 aide, but she set back to allow me

freedom. I had that same friend from grade 3 to 5. She

walked with me to classes as we had the same ones. She

even got to school early and waited out front for me

on the days we had honors choir practice together.

In middle school grade 6 - 8 I again had a 1 on 1 who

assisted me with getting things, writing if I needed

someone to take notes when I was tired, and

suctioning. By this age I learned to hold my bladder

till I got home! Again I had friends that also took on

some of those responsibilities. Each of my teachers

allowed one friend to leave 5 min early with me to get

through the halls. They totally supported me trying to

have my own independence!

In high school I really got more independent but still

had a 1 on 1 aid. In grade 9 she met me at the bus,

was in all my classes and just sat back until I needed

her. my boyfriend or other kids in the class would get

my instrument for band or my books or whatever. By

highschool I learned to fight the crowds and did not

leave all of my classes early. Usually my aid would

just meet me at my next class and I would walk with

friends. In grades 10-12 my friend drove to school

with me and we had most classes together. So she took

on most of my responsibilites. By highschool I rarely

needed help with notes unless I was too cold to write.

So then my 1 on 1 was mostly there for my medical

needs when my friend couldnt do it.

My first 2 years of college my best friend took me and

became my 1 on 1 aid. All of our classes matched so it

worked fine. Now in University, my mother takes me and

plays the role of my aid.

I was lucky enough throughout school to have friends

and a school system that worked with me.. but I did

need that 1 on 1 aid! I also cannot lift a book or

open a door or get things out of my bag or get to my

suction alone... I needed that aide so that if one day

my friend wasnt there, my aid was! I always had back

up aides as well!

Whew that was long!

>

> Re: Good point e re:

> SMA students w/assistants/ parent perspective

>

> I'm not attacking ANYONE or any particular idea

> that has been expressed. I just want to point out a

> few things that I don't think are occuring to most

> people.

> First, I'd like to point out that MANY (not all) of

> you who have a diagnosis of type 2 walked (or at

> least stood) independently for some of your younger

> years. Even just 10 years ago, children as weak as

> Brett, h, B. and the other children who

> have parents on this list... well, to be blunt, they

> just didn't live long enough to get to jr. high or

> high school. Remember that the classification system

> has changed a bit and now anyone who has stood or

> walked independently is diagnosed as a type 3. Many

> of the type 3 children do NOT require or have one on

> one aids. They have more strength, especially upper

> body, and don't require as much assistance. h

> can't even get a notebook out of her desk without

> assistance. She also requires a suction machine at

> school which must be kept in the one bathroom that

> is accessible. A student can't possibly help her

> with that!

> Our experience: h has always had a one on one

> aide since pre-K (in ECIP at 3 there was a classroom

> aide that spent most of her time with h) and to

> be blunt, could probably not have survived in school

> without one. h can write some, but she tires

> easily and needs someone to scribe for her. She

> can't manage her books, papers or other supplies.

> She can't open doors or her locker. h sometimes

> even requires assistance to eat.

> This year the school board decided that h

> didn't need a one on one aide. She went to school a

> total of 7 days before she left for her spinal

> fusion (Aug 11 was her last day) and after those 7

> days h's teachers and the students (her friends)

> who were expected to help her were obviously

> frustrated which made h feel terrible. h and

> the friends who were helping her were getting in

> trouble for being late to classes because not only

> did the girls have to go to their own lockers, but

> then to h's and then getting through the halls

> takes longer because of h's chair... you get the

> point. The faculty is expecting the girls to be able

> to accomplish doing twice as much in the same amount

> of time! It's not fair to put that kind of

> responsibility on a 10 year old. It's also not fair

> that h's friends are so overwhelmed and

> frustrated by the situation that they don't really

> WANT to help anymore. These are the same girls that

> have been in class with h for 2

> years and have JUMPED to help whenever h's aide

> was busy or out of the room for a moment. The

> difference is that before they were helping because

> they WANTED to and now they are EXPECTED to.

> I don't feel like it's fair to say that our kids

> are going to grow up with " expectations " or to imply

> that they won't be as productive or independent as

> adults because we are babying them now. Just about

> everyone here who has known me for anytime at all

> should know that I encourage h to do everything

> she can to the best of her ability. Her best just

> may not be the same as y'alls best! She's one of the

> weaker type 2's and does well within HER bounderies.

> I believe Brett and are also weaker type 2's

> (correct me if I'm wrong moms!) and like h,

> probably couldn't survive and succeed in the school

> system.

> Maybe I'm just cranky because we've spent the past

> almost 4 weeks in the hospital, but I kind of feel

> like y'all are questioning our judgement in making

> sure our kids have assistance in school. I seriously

> hope I've misinterpreted the entire thread.

>

> Love and Hugs

> Jeni

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

__________________________________________________________

> Check out the new AOL. Most comprehensive set of

> free safety and security tools, free access to

> millions of high-quality videos from across the web,

> free AOL Mail and more.

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

No way!! I do admit that I do not like to ask

'strangers' for help... but I have learned that

sometimes ya have to! Having 1 on 1 made me a stronger

person... it made me try harder to make friends and

learn to be as dependent as I could because I hated

having an adult lurking over my every move. But I know

that I DID and still DO need that care so that I am

fully taken care of.

And back to the question of the school paying for

it... why the heck not! do you know how many parents

would not be able to send their child to school if

they had to pay for it out of pocket!? I know I

wouldnt have gone to school if it were that way! In

college I had to go thru a different system for

attendent care and it sucks! They only pay for time

spent in class... so if I have a 20 min break between

classes, my aid does not get paid! If it wasnt my best

friend or my mom I could have very well been deserted

during that time!

I agree with the comparison of it to adult attendent

care that the state pays for.

--- Jenifer Woody <mom2armybratz@...> wrote:

> Thanks . I see that having a 1 on 1 hasn't

> made you more dependent or expectant, so we must not

> be doing THAT badly *LOL*

> Oh, I will be sending pics w/in a few days. Miss

> h is looking forward to some strappy little tank

> tops!

> Hugs

> Jeni

>

> *~~* <abrcrombsweetie@...> wrote:

> Jeni I want to highly agree with you!! I

> have had a 1

> on 1 aid since PreK as well. Even now in college I

> still have that. For the mass now, I need someone

> with

> me in case I need sectioned. Lets start at the

> beginning!

>

> Starting in PreK till say grade 2, my 1 on 1 was

> there

> to help me with toileting, writing, and getting my

> stuff. I was trached in grade 2 so they then took on

> that responsibility. In grade 3 I had a friend who

> took on that responsibilty when the teacher allowed

> it. If we werent doing anything big, the teacher did

> not care if she took me to the restroom to suction.

> I

> still had a 1 on 1 aide, but she set back to allow

> me

> freedom. I had that same friend from grade 3 to 5.

> She

> walked with me to classes as we had the same ones.

> She

> even got to school early and waited out front for me

> on the days we had honors choir practice together.

>

> In middle school grade 6 - 8 I again had a 1 on 1

> who

> assisted me with getting things, writing if I needed

> someone to take notes when I was tired, and

> suctioning. By this age I learned to hold my bladder

> till I got home! Again I had friends that also took

> on

> some of those responsibilities. Each of my teachers

> allowed one friend to leave 5 min early with me to

> get

> through the halls. They totally supported me trying

> to

> have my own independence!

>

> In high school I really got more independent but

> still

> had a 1 on 1 aid. In grade 9 she met me at the bus,

> was in all my classes and just sat back until I

> needed

> her. my boyfriend or other kids in the class would

> get

> my instrument for band or my books or whatever. By

> highschool I learned to fight the crowds and did not

> leave all of my classes early. Usually my aid would

> just meet me at my next class and I would walk with

> friends. In grades 10-12 my friend drove to school

> with me and we had most classes together. So she

> took

> on most of my responsibilites. By highschool I

> rarely

> needed help with notes unless I was too cold to

> write.

> So then my 1 on 1 was mostly there for my medical

> needs when my friend couldnt do it.

>

> My first 2 years of college my best friend took me

> and

> became my 1 on 1 aid. All of our classes matched so

> it

> worked fine. Now in University, my mother takes me

> and

> plays the role of my aid.

>

> I was lucky enough throughout school to have friends

> and a school system that worked with me.. but I did

> need that 1 on 1 aid! I also cannot lift a book or

> open a door or get things out of my bag or get to my

> suction alone... I needed that aide so that if one

> day

> my friend wasnt there, my aid was! I always had back

> up aides as well!

>

> Whew that was long!

>

> >

> > Re: Good point e re:

> > SMA students w/assistants/ parent perspective

> >

> > I'm not attacking ANYONE or any particular idea

> > that has been expressed. I just want to point out

> a

> > few things that I don't think are occuring to most

> > people.

> > First, I'd like to point out that MANY (not all)

> of

> > you who have a diagnosis of type 2 walked (or at

> > least stood) independently for some of your

> younger

> > years. Even just 10 years ago, children as weak as

> > Brett, h, B. and the other children who

> > have parents on this list... well, to be blunt,

> they

> > just didn't live long enough to get to jr. high or

> > high school. Remember that the classification

> system

> > has changed a bit and now anyone who has stood or

> > walked independently is diagnosed as a type 3.

> Many

> > of the type 3 children do NOT require or have one

> on

> > one aids. They have more strength, especially

> upper

> > body, and don't require as much assistance. h

> > can't even get a notebook out of her desk without

> > assistance. She also requires a suction machine at

> > school which must be kept in the one bathroom that

> > is accessible. A student can't possibly help her

> > with that!

> > Our experience: h has always had a one on one

> > aide since pre-K (in ECIP at 3 there was a

> classroom

> > aide that spent most of her time with h) and

> to

> > be blunt, could probably not have survived in

> school

> > without one. h can write some, but she tires

> > easily and needs someone to scribe for her. She

> > can't manage her books, papers or other supplies.

> > She can't open doors or her locker. h

> sometimes

> > even requires assistance to eat.

> > This year the school board decided that h

> > didn't need a one on one aide. She went to school

> a

> > total of 7 days before she left for her spinal

> > fusion (Aug 11 was her last day) and after those 7

> > days h's teachers and the students (her

> friends)

> > who were expected to help her were obviously

> > frustrated which made h feel terrible. h

> and

> > the friends who were helping her were getting in

> > trouble for being late to classes because not only

> > did the girls have to go to their own lockers, but

> > then to h's and then getting through the halls

> > takes longer because of h's chair... you get

> the

> > point. The faculty is expecting the girls to be

> able

> > to accomplish doing twice as much in the same

> amount

> > of time! It's not fair to put that kind of

> > responsibility on a 10 year old. It's also not

> fair

> > that h's friends are so overwhelmed and

> > frustrated by the situation that they don't really

> > WANT to help anymore. These are the same girls

> that

> > have been in class with h for 2

> > years and have JUMPED to help whenever h's

> aide

> > was busy or out of the room for a moment. The

> > difference is that before they were helping

> because

> > they WANTED to and now they are EXPECTED to.

> > I don't feel like it's fair to say that our kids

> > are going to grow up with " expectations " or to

> imply

> > that they won't be as productive or independent as

> > adults because we are babying them now. Just about

> > everyone here who has known me for anytime at all

> > should know that I encourage h to do

> everything

> > she can to the best of her ability. Her best just

> > may not be the same as y'alls best! She's one of

> the

> > weaker type 2's and does well within HER

> bounderies.

> > I believe Brett and are also weaker type 2's

> > (correct me if I'm wrong moms!) and like h,

> > probably couldn't survive and succeed in the

> school

> > system.

> > Maybe I'm just cranky because we've spent the past

> > almost 4 weeks in the hospital, but I kind of feel

> > like y'all are questioning our judgement in making

> > sure our kids have assistance in school. I

> seriously

> > hope I've misinterpreted the entire thread.

> >

> > Love and Hugs

>

=== message truncated ===

__________________________________________________

[Guest guest]

Because I pay taxes too- whatever is needed for my son to excel at school is

their responsibility. If I decided to send my son to private school then I would

be required to pay for his aide.

Kristal

Mom to Brett- SMA II- 6-1/2 years old

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

Learn more about SMA:

www.fsma.org

www.smasupport.com

Re: Re: Good point e re: SMA students

w/assistants/ parent perspective

I fully believe that these children need one-on-one care. I do,

however, wonder why parents expect the school system to pay for it.

Lori

jennifer wrote:

> Gosh, I feel kind of responsible for starting this whole

> thing. I mostly just was surprised they even had such a

> thing as " one on one aides " because they certainly didn't

> have them when I was in school in the 70s and 80s. The

> public schools in my town seem to run on a constant budget

> shortage and I just was amazed they had/found money

> to do that.

>

> I can especially see how it'd important to have

> someone available for suctioning and other more

> complex medical procedures. When I was in school, I

> didn't have very many breathing problems, but I couldn't

> walk at all and needed help moving pretty much

> everything around. My writing was fine though. Later on

> in high school, when I started getting bronchitis and

> things like that, I always had to go to the nurse's

> office for help.

>

> But I'm sure parents on here know best what their kids

> need, especially when they are still in grade school. Once

> they get older, if they don't want the one on one aide, I'm

> sure they'd let you know.

>

> Jenn (the other one)

>

>

[Guest guest]

You're right, Jenifer. Many people had more mobility. I had the

ability to feed myself and write without assistance. I could not

lift my own books from lap to desk, carry my lunch tray, open doors,

or use the restroom. Surprisingly, the nurse or whichever office

staff were around (we didn't have a nurse every day) refilled my

liquid oxygen tank during 4th period of my sophmore year. Otherwise

I got help from friends and held my urine (to my great detriment

now). I'm glad for the assertiveness I learned, and am sad that I

was burdened with a lack of sense of entitlement about basic things

such as going to the bathroom.

Alana

>

> I'm not attacking ANYONE or any particular idea that has been

expressed. I just want to point out a few things that I don't think

are occuring to most people.

> First, I'd like to point out that MANY (not all) of you who have

a diagnosis of type 2 walked (or at least stood) independently for

some of your younger years. Even just 10 years ago, children as weak

as Brett, h, B. and the other children who have parents on

this list... well, to be blunt, they just didn't live long enough to

get to jr. high or high school. Remember that the classification

system has changed a bit and now anyone who has stood or walked

independently is diagnosed as a type 3. Many of the type 3 children

do NOT require or have one on one aids. They have more strength,

especially upper body, and don't require as much assistance. h

can't even get a notebook out of her desk without assistance. She

also requires a suction machine at school which must be kept in the

one bathroom that is accessible. A student can't possibly help her

with that!

> Our experience: h has always had a one on one aide since pre-

K (in ECIP at 3 there was a classroom aide that spent most of her

time with h) and to be blunt, could probably not have survived in

school without one. h can write some, but she tires easily and

needs someone to scribe for her. She can't manage her books, papers

or other supplies. She can't open doors or her locker. h

sometimes even requires assistance to eat.

> This year the school board decided that h didn't need a one

on one aide. She went to school a total of 7 days before she left for

her spinal fusion (Aug 11 was her last day) and after those 7 days

h's teachers and the students (her friends) who were expected to

help her were obviously frustrated which made h feel terrible.

h and the friends who were helping her were getting in trouble

for being late to classes because not only did the girls have to go

to their own lockers, but then to h's and then getting through

the halls takes longer because of h's chair... you get the

point. The faculty is expecting the girls to be able to accomplish

doing twice as much in the same amount of time! It's not fair to put

that kind of responsibility on a 10 year old. It's also not fair that

h's friends are so overwhelmed and frustrated by the situation

that they don't really WANT to help anymore. These are the same girls

that have been in class with h for 2

> years and have JUMPED to help whenever h's aide was busy or

out of the room for a moment. The difference is that before they were

helping because they WANTED to and now they are EXPECTED to.

> I don't feel like it's fair to say that our kids are going to

grow up with " expectations " or to imply that they won't be as

productive or independent as adults because we are babying them now.

Just about everyone here who has known me for anytime at all should

know that I encourage h to do everything she can to the best of

her ability. Her best just may not be the same as y'alls best! She's

one of the weaker type 2's and does well within HER bounderies. I

believe Brett and are also weaker type 2's (correct me if I'm

wrong moms!) and like h, probably couldn't survive and succeed in

the school system.

> Maybe I'm just cranky because we've spent the past almost 4 weeks

in the hospital, but I kind of feel like y'all are questioning our

judgement in making sure our kids have assistance in school. I

seriously hope I've misinterpreted the entire thread.

>

>

>

> Love and Hugs

> Jeni

>

>

>

>

[Guest guest]

Lori,

You bring up a very interesting question. I can answer it in a couple

different ways.

1 - In 1975, Congress passed Public Law 94-142 (Education of All

Handicapped Children Act) now codified as IDEA (Individuals with

Disabilities Education Act) mandates that " In order to receive federal

funds, states must develop and implement policies that assure a free

appropriate public education to all children with disabilities. "

Presently, if the school system doesn't provide the services necessary

for disabled children to be educated, those services would have to be

provided for by parents, charitable organizations, and or private

health insurance. Services provided would be even more unevenly

distirubted than they already are.

2 - The services disabled children need to participate at school are

health care and/or " personal assistance. " Presently, Medicare doesn't

pay for any services beyond the basics needed to survive in an

institution or home-bound, and does does not pay for any personal

assistance services in any other environment. Medicare is the model,

it sets the standard of care used by the private health insurance

industry. Until people with disabilities universally have access to

health care AND personal assistance services whether we are at home,

school or work, there will be a gap here that is only partly and

haphazardly filled by public schools, wealthy families, volunteers, an

accompanying family member, or Medicaid. Or people go without.

I don't think most parents have other viable options from which they

can expect assistance for their children.

My 77 cents on the dollar's worth.

Alana

>

> I fully believe that these children need one-on-one care. I do,

> however, wonder why parents expect the school system to pay for it.

>

> Lori

>

>

[Guest guest]

I just wanted to mentioned something I did that might make it easier for some

who are students now. I kept all my text books at home and then had the

instuctor keep one for me in the class room so I wouldn't need to be bringing

books to school. All I had to worry about what bringing a pen and folder with

papers. At the end of the year I would just return all the books.

---------------------------------

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Great tip Joy! Danny always kept all of his books, folders, etc. in a

big backpack that hung on the back of his power chair, so he never

needed to go to a locker.

>

> I just wanted to mentioned something I did that might make it

easier for some who are students now. I kept all my text books at home

and then had the instuctor keep one for me in the class room so I

wouldn't need to be bringing books to school. All I had to worry about

what bringing a pen and folder with papers. At the end of the year I

would just return all the books.

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

>